Friday, March 16, 2018

Ten New Novel Research Projects


Ten New Novel Research Projects Focus on MS Fatigue, Gut Bugs, Transcranial Stimulation and More

March 12, 2018
SUMMARY
  • The National MS Society has just committed funding for 10 high-risk pilot research grants to quickly test novel ideas. Additional pilot studies will be funded throughout the year.
  • The new pilot studies include interventions for fatigue and loneliness, transcranial stimulation to improve walking, and a strategy to alter the effects of gut bacteria as a potential treatment for MS.
  • The Pilot Research Grants program is one way that the Society maintains a diverse research portfolio that includes short- and long-term investments, balances risks and rewards, and funds research globally.

DETAILS
How does an investigator get that very first grant to test an innovative, cutting-edge research idea and get the first bit of data that will convince funders that the idea is worthwhile? The National MS Society has a pilot research program that addresses this important need. The Society just committed more than $400,000 to fund 10 high-risk pilot grants to quickly test novel ideas, including interventions for fatigue and loneliness, transcranial stimulation to improve walking, and a strategy to alter the effects of gut bacteria in MS-like disease in mice. Additional pilot projects will be funded throughout the year.

Pilot grants allow researchers to gather preliminary data so they can apply for longer-term funding – or put the idea to rest. The grant provides one year of funding. This program is one way that the Society maintains a diverse research portfolio that includes short- and long-term investments, balances risks and rewards, and funds research globally.

A recent survey of nearly 300 Society pilot grant recipients indicates that this program succeeds in bringing new ideas and new researchers to the field of MS research:
  • 85% or respondents report their pilot was a new idea;
  • 45% of investigators were outside of the MS field;
  • 56% leveraged the pilot project to win larger grants;
  • 90% agreed the funding was impactful to their research program.

Here are just a few of the new pilot projects to which the Society has made commitments:
•Pawan Kumar, PhD (State University of New York at Stony Brook, Stony Brook, NY) will test molecules in mice that may help to regulate gut bacteria and the immune response in MS-like disease. The inflammatory immune response to gut bacteria has been thought to play a critical role in the development of MS. This and other ongoing studies of the role of the gut microbiome in MS study could pave the way for new probiotic strategies that alter gut bacteria to stop MS.
•Thorsten Rudroff, PhD (Colorado State University, Fort Collins, CO) will test whether stimulating parts of the brain – called neurostimulation -- can improve weakness on one side of the body. Weakness is experienced by many people with MS, and it is a significant cause of progressive worsening of walking ability. Transient direct current stimulation (tDCS, which low, direct current delivered via electrodes on the head) has been shown to enhance motor performance in people who experience strokes. This study will gather preliminary evidence for the use of tDCS to improve walking in people with MS.
•Bardia Nourbakhsh, MD (Johns Hopkins University, Baltimore, MD) will conduct a clinical trial testing whether ketamine, an anesthetic that affects glutamate signaling, can improve fatigue in 18 people with MS. Fatigue is one of the most common symptoms of MS, and  there is preliminary evidence that the brain signaling chemical glutamate, which has an important role in the communication between nerve cells, may have a role in the generation of fatigue. The preliminary results from this pilot project may lead to larger studies and provide new insight into the cause and treatment of this disabling symptom of MS.
•Victoria Leavitt, PhD (Columbia University, New York, NY) will attempt to address feelings of loneliness in people with MS using "e-Support” – online, private, support groups developed by her team that can be joined by people with MS without leaving their homes. Support groups are an excellent resource for people who are lonely, but the logistics of getting to a support group can become a stressor in itself. With this pilot study Dr. Leavitt will also characterize benefits of support group membership to promote their use as a treatment component for people with MS. 

Read More:
Download a list of new pilot projects
Learn more about research funded by the National MS Society

About Multiple Sclerosis

Multiple sclerosis is an unpredictable, often disabling disease of the central nervous system that disrupts the flow of information within the brain, and between the brain and body. Symptoms range from numbness and tingling to blindness and paralysis. The progress, severity and specific symptoms of MS in any one person cannot yet be predicted, but advances in research and treatment are leading to better understanding and moving us closer to a world free of MS. Most people with MS are diagnosed between the ages of 20 and 50, with at least two to three times more women than men being diagnosed with the disease. MS affects more than 2.3 million people worldwide.

Tuesday, March 6, 2018

U.S. Representative Elijah Cummings Honored for Commitment to Changing the World for People Living with Multiple Sclerosis


March 1, 2018
The National Multiple Sclerosis (MS) Society has named U.S. Rep. Elijah Cummings of Maryland’s 7th District as its 2017 U.S. Representative of the Year. 

Rep. Cummings is a long-time advocate for fair prescription drug pricing. As a ranking member of the House Committee on Oversight and Government Reform, he has led the drive within Congress to enhance transparency and clarity on MS-drug prices, bringing together a bipartisan group of legislators to request a briefing on the topic from the Department of Justice and the Federal Trade Commission. He has also co-sponsored the Fair Accountability and Innovative Research (FAIR) Drug Pricing Act, which would require drug manufacturers to file a report with the Department of Health and Human Services when they increase the price of their drugs beyond a certain threshold.

In his more than two decades as a Representative, Rep. Cummings has also been a steadfast supporter of medical research, joining the National MS Society to advocate for increased funding for the National Institutes of Health (NIH) and the MS Research Program (MSRP).

“Representative Cummings has long recognized the importance of accessible, affordable healthcare for people living with MS,” said National MS Society President and CEO Cyndi Zagieboylo. “His efforts to shed light on pharmaceutical company practices, and to ensure fair pricing for the medications that are so critical in helping to restore what has been lost to the disease, are invaluable in our mission to end MS.”

“I am truly honored to receive this award from the National Multiple Sclerosis Society and I am so grateful for their leadership in working to improve the lives of those with this disease,” Rep. Elijah Cummings said. “I’ve worked to hold pharmaceutical companies selling drugs used to treat MS accountable for increasing their prices unjustly. I believe no American should be forced to struggle to afford life-changing medical treatments, especially when drug companies increase prices without warning, cause, or justification. Together we can make a real difference in the lives of those affected by this disease and it is imperative we each commit to doing our part in the fight.”

The National MS Society presented Rep. Cummings with the U.S. Representative of the Year award during its 27th annual Public Policy Conference, held March 5-7, where more than 300 MS activists from across the country joined together in Washington, D.C. to educate elected officials about the needs of people living with MS. Nominations for the honor are open to the public. Awardees are chosen by the National MS Society Board of Directors.

About Multiple Sclerosis

Multiple sclerosis is an unpredictable, often disabling disease of the central nervous system that disrupts the flow of information within the brain, and between the brain and body. Symptoms range from numbness and tingling to blindness and paralysis. The progress, severity and specific symptoms of MS in any one person cannot yet be predicted, but advances in research and treatment are leading to better understanding and moving us closer to a world free of MS. Most people with MS are diagnosed between the ages of 20 and 50, with at least two to three times more women than men being diagnosed with the disease. MS affects more than 2.3 million people worldwide.

Monday, March 5, 2018

U.S. Representative Ryan Costello Honored for Commitment to Changing the World for People Living with Multiple Sclerosis


March 1, 2018
The National Multiple Sclerosis (MS) Society has named U.S. Rep. Ryan Costello, of Pennsylvania’s 6th District, as its 2017 U.S. Representative of the Year. 

Since his election in 2014, Rep. Costello has played a critical role in support of those living with MS as co-chair of the Congressional MS Caucus and co-lead of Dear Colleague campaigns that call for increased funding for MS-related research. 

Additionally, Rep. Costello has consistently taken legislative positions that further showcase his commitment to the cause. He voted against the American Health Care Act in 2017, which would have eroded protections for people with pre-existing conditions, caused millions of Americans to lose healthcare coverage and weakened the Medicaid program. He co-sponsored two important bills that have been signed into law. The first repeals the Medicare therapy cap which will enable people with MS to access needed physical, occupational and speech-language therapy. The second—the Recognize, Assist, Include Support and Engage (RAISE) Family Caregivers Act—will establish a national coordinated strategy to better support family caregivers.
 
“Representative Costello recognizes the many factors that fold into a life with MS and has wasted no time in working toward addressing them,” said National MS Society President and CEO Cyndi Zagieboylo. “From research breakthroughs, to enhancing everyday care and support systems, the efforts led by Representative Costello are invaluable as we work toward ending MS.”
 
“Hearing from constituents and their families who are living with Multiple Sclerosis has given me valuable insight into how to support them through my work in Congress. More research can lead to the genesis of new treatments and reducing regulatory burdens can result in life changing care – I’ve been proud to advocate for each of these initiatives in the past and will continue to do so in the future,” said Rep. Ryan Costello (PA-06), Co-Chair of the Congressional Multiple Sclerosis Caucus. “I am honored to receive this award, but above all, I am honored to be a voice for the many families and caregivers who are courageously advocating for a cure to defeat MS.”
 
The National MS Society presented Rep. Costello with the U.S. Representative of the Year award during its 27th annual Public Policy Conference, held March 5-7, where more than 300 MS activists from across the country joined together in Washington, D.C. to educate elected officials about the needs of people living with MS. Nominations for the honor are open to the public. Awardees are chosen by the National MS Society Board of Directors.

About Multiple Sclerosis

Multiple sclerosis is an unpredictable, often disabling disease of the central nervous system that disrupts the flow of information within the brain, and between the brain and body. Symptoms range from numbness and tingling to blindness and paralysis. The progress, severity and specific symptoms of MS in any one person cannot yet be predicted, but advances in research and treatment are leading to better understanding and moving us closer to a world free of MS. Most people with MS are diagnosed between the ages of 20 and 50, with at least two to three times more women than men being diagnosed with the disease. MS affects more than 2.3 million people worldwide.

U.S. Senator Susan Collins Recognized as National Multiple Sclerosis Society U.S. Senator of the Year


March 1, 2018
The National Multiple Sclerosis (MS) Society has recognized U.S. Senator Susan Collins of Maine as its 2017 U.S. Senator of the Year.

Sen. Collins is a member of the Congressional MS Caucus and serves on key committees including the Health, Education, Labor & Pensions (HELP) Committee and Appropriations Committee. She is a vocal defender of access to affordable healthcare, repeatedly voting against the American Health Care Act, which would have weakened protections and increased costs for people with pre-existing conditions, reduced coverage for millions of Americans and weakened the Medicaid program.

In the recently-enacted Tax Cuts and Reform Act, Senator Collins authored an amendment that will preserve and temporarily increase the ability for people with high medical costs to deduct certain expenses. Sen. Collins is also a leader for family caregivers. During the 115th Congress, she introduced, and Congress passed, the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act, which will establish a national coordinated strategy to better support family caregivers. Additionally, she introduced a bill to reauthorize the Lifespan Respite Care Program which provides grants to states to better coordinate and deliver respite services.

“We are proud to recognize Senator Collins as United States Senator of the Year,” said National MS Society President and CEO Cyndi Zagieboylo. “Her brave, unwavering commitment to so many of the causes important to people living with MS is invaluable as we work to end the disease.”
 
“I am honored to be named the National Multiple Sclerosis Society U.S. Senator of the Year,” said Senator Collins.  “The National Multiple Sclerosis Society’s vision is a world free of MS, and they have worked hard to help those affected by this disease by providing financial resources, education, and emotional support.  I am proud to support this organization in their efforts.” 
 
In 2016, Senator Collins led a bipartisan investigation into the abrupt and dramatic price increases for prescription drugs whose patents expired long ago.  Last year, bipartisan legislation coauthored by Senator Collins to improve the affordability and accessibility of prescription drugs for patients was signed into law. 

The National MS Society presented Sen. Collins with the U.S. Senator of the Year award during its 27th annual Public Policy Conference, held March 5-7, where more than 300 MS activists from across the country joined together in Washington, D.C. to educate elected officials about the needs of people living with MS. Nominations for the honor are open to the public. Awardees are chosen by the National MS Society Board of Directors.

About Multiple Sclerosis

Multiple sclerosis is an unpredictable, often disabling disease of the central nervous system that disrupts the flow of information within the brain, and between the brain and body. Symptoms range from numbness and tingling to blindness and paralysis. The progress, severity and specific symptoms of MS in any one person cannot yet be predicted, but advances in research and treatment are leading to better understanding and moving us closer to a world free of MS. Most people with MS are diagnosed between the ages of 20 and 50, with at least two to three times more women than men being diagnosed with the disease. MS affects more than 2.3 million people worldwide.

Zinbryta (daclizumab), a Therapy for Relapsing MS, is Withdrawn from Market


March 2, 2018

Biogen and AbbVie have announced the voluntary withdrawal Zinbryta ™ (daclizumab) from the worldwide market.

Zinbryta is an immune-modulating therapy that was approved in 2016 for people with relapsing MS and generally reserved for people who had an inadequate response to two or more MS therapies.

According to a company press release, the European Medicines Agency had raised new safety concerns related to reports of inflammation of the brain or its surrounding tissues (inflammatory encephalitis and meningoencephalitis) among people taking Zinbryta.

Individuals currently taking Zinbryta should contact their healthcare providers to determine alternative treatment options, and to continue safety monitoring. 

According to the medication guide, this would include monthly blood tests to monitor liver function for up to six months after the last dose.

Saturday, March 3, 2018

HR 5150 Bill to Strengthen Medicare, Reduce Drug Costs for Patients

Mar 1, 2018 Issues: Health Care

WASHINGTON, D.C. - Today, Representative Sandy Levin (D-MI), the Ranking Member of the Ways and Means Subcommittee on Health, introduced the Protecting Medicare from Excessive Price Increases Act. The bill will require prescription drug manufacturers to pay a rebate when the price of their Part B drug increases faster than inflation.
“Medicare currently has no protection against excessive price increases for prescription drugs covered through Part B,” said Rep. Levin. "This leads to unnecessary growth in program spending and higher costs for beneficiaries. Informed by recommendations of the nonpartisan Medicare Payment Advisory Commission, this bill is an important step that will help strengthen the Medicare program and reduce out-of-pocket costs for seniors.”
Although most prescription drugs are covered by Medicare under Part D, there are many categories of outpatient drugs covered through Part B. These include injectable medicines, cancer treatments, certain vaccinations, and other medications administered directly in a physician's office or in a hospital outpatient department. Total spending on Part B drugs was $25.8 billion in 2015, of which approximately $5 billion was paid out-of-pocket by beneficiaries.
Under current law there is essentially no limit on manufacturers’ authority to set and raise prices for medications covered by Part B. Spending on such drugs has grown on average by 9 percent annually since 2009.
In response to a request made by Rep. Levin and former Rep. Jim McDermott (D-WA) to investigate the matter, the Department of Health and Human Services’ Office of the Inspector General indicated that implementing an inflation rebate program for the 64 most expensive Part B drugs could protect the federal government and Medicare beneficiaries from significant drug price increases to the tune of $1.4 or $1.8 billion dollars in 2015 alone.

Friday, March 2, 2018

Bills I Support


HOUSE of REPRESENTATIVESStatusRelated BillsCosponsors
HR 184
Repeals Medical Device Excise TaxTax suspended until 2020 S.108 S.2287263
HR 394
Repeals limiting payments from HSAs & flex spending accts to only prescription drugs Ways & MeansS.8519
HR 750
Ensuring Access to Quality Complex Rehabilitation Technology Act of 2017Subcommittee on Health98
HR 807
Repeals Medicare outpatient rehabilitation therapy capsSubcommittee on HealthS.253240
HR 849
Repeals the Independent Payment Advisory BoardPassed House 11/2/2017HR600 S.251 S.260270
HR.2077
Restoring the Patient's Voice Act of 2017Committee on education & the workforce37
HR.2212
CREATES Act timely entry of lower-cost generic and biosimilarsHouse Judiciary Subcommittee on HealthS.9749
HR 2439
Fair Drug PricingSubcommittee on HealthS.11319
HR 2804
Air Carrier AccessSubcommittee on Aviation.2
HR 3759
Raise Family Caregivers ActBECAME LAW 1/22/2018113
HR 5150
Medicare part B rebate0
HJ Resolution 129
Net NeutralityEnergy & Commerce154
U.S. SENATE
S 85
Repeals limiting payments from HSAs & flex spending accts to only prescription drugsSame as HR 394 Committee on FinanceHR.3943
S108
Repeals Medical Device Excise TaxTax suspended until 2020HR.184 S.228717
S.637
Transparency of Drug RebatesCommittee on Finance3
S251
Repeals the Independent Payment Advisory BoardCommitte on FinanceHR.849 S,26014
S253
Repeals Medicare outpatient rehabilitation therapy capsCommitte on FinanceHR.80737
S260
Repeals the Independent Payment Advisory BoardCommitte on FinanceS.251 HR.84937
S 870
Chronic Care ActPassed SenateHR.189221
S.974
CREATES Act timely entry of lower-cost generic and biosimilarsCommittee on JudiciaryHR.221218
S 1028
Family Caregivers Act of 2017- RAISEHR 3759 BECAME LAW 1/22/2018HR.375915
S 1131
Fair Drug PricingSenate HELPHR.24391
S 1318
Air Carrier Access
S.2287
Repeals the medical device excise taxCommitte on Finance1
PENNSYLVANIA LEGISLATURE
PA HB 161
Pharma Transparency20
PA HB 496
LIVABLE HOME TAX CREDIT15
PA HB 1293
PreAuthoizations41
PA HB 2113
Non Medical Switching18
PA SB 637
Pharmaceutal Transparency6
PA SB 678
Surprise Balance Billing10
PA SB 853
LIVABLE HOME TAX CREDIT12
Senate Resolution 276
Recognizes the week of March 11 through 17, 2018, as "Multiple Sclerosis Awareness Week" in Pennsylvania.